Monday, June 3, 2013

This is unbelievable and yet
horrifyingly true. ‘Jenny’ had been fighting her illness for almost
half of her young life. Her foe was familiar yet still terrifying with its relentless
and changing symptoms that reoccurred despite a long list of medical
interventions. She had been through intense treatments with numerous side
effects and a lengthy hospitalization when she was 11. Now, at 15, her illness
was back with a vengeance. The diagnosis (kidney disease) still puzzled the
medical team as they debated what to do next.

At the advice of her doctors, Jenny had recently started a daily outpatient
treatment, but her illness continued to escalate and was now life threatening. She
was tired of hospitals, tests and medications that didn’t work and seemed to
only make her sicker. Nothing could ease her pain. Jenny wanted to give up, she
wanted an end to this ‘life’ that was void of most of the things that teenage
girls ought to be doing and filled with suffering. Jenny had lost hope.

Jenny’s parents took her to go to the emergency room, hoping that the doctors
could convince her to be hospitalized, to get the care, the monitoring, the
medications she needed to keep her alive.In the emergency room, Jenny panicked. The nurse brought in a syringe, and
Jenny screamed that she wanted to go home. She refused treatment.

As in many states young people can refuse treatment once they turn 14. Jenny’s parents couldn’t bear to see their
beautiful daughter in so much agony, and they couldn’t bear the thought of
losing her. Yet Jenny stood firm in her decision. She was so sick, so exhausted
and so weakened by her kidney disease that she wasn’t thinking clearly. Yet her
parents had no authority to get Jenny the medical care she so desperately
needed. She was slipping away right before their very eyes.

One of
the nurses pulled Jenny’s parents aside. There was a way, but it would be
difficult. Because Jenny was clearly in danger of dying, her mom and dad could
call the police who could take over and legally (and physically) force Jenny
into treatment. It sounded horrible, but the alternative was worse. Reluctantly
they made the call.

The
police arrived, and the process began and became increasingly complicated. The
hospital was not equipped to treat Jenny’s condition, so she needed to be
transported elsewhere. The caseworker worked to find a hospital that could
treat Jenny and that had a bed available. Hour after hour went by while Jenny
became more and more agitated, her pain increased and the medications she was
given had little effect.

Finally
a hospital with an open bed was found. As quickly as Jenny’s parents saw a
glimmer of light, their hopes were dashed. The ‘hospital’ was 90 miles away and
was a part of the state department of corrections. Jenny’s parents begged for a
different placement. They knew that there was an open bed at a different
hospital but Jenny could not go there. Now that police were involved, the
options were limited to the hospitals that contracted with the county. Jenny’s
parents no longer had any authority, not over their daughter, not over her
care. They could not take back their decision and they could not take Jenny
home. They were powerless.

Jenny
sobbed and yelled and cursed. She was terrified, the police were frightening
her and she didn’t want to be so far away from her parents, from her home and
from everything familiar. One of the policemen barked at Jenny, telling her to
quiet down, to stop yelling or he would charge her with disorderly conduct and
put her in handcuffs. Jenny’s parents were stunned. How could this be happening?
All they wanted was to get medical care for their child and suddenly she was a
criminal.

The
ambulance arrived to transport Jenny to the ‘hospital’. Jenny begged for her
mom to ride with her in the ambulance, to comfort her and hold her hand. But
the police didn’t agree. Jenny would be accompanied by one of the police
officers, the very people who terrified her. The best that Jenny’s parents
could do was to follow the ambulance, fighting to see the taillights and the
road through their tears.

At the
hospital, Jenny was read her rights . . . “You have the right to remain silent,
you have the right to an attorney, anything you say may be used against you . .
. “.Jenny’s parents were in shock. How
can this be?? She is ill. She needs treatment. She has kidney disease! Her mom
said “Can we speak to the doctor? We need to discuss Jenny’s medications, her
care, how do we get her out of here????” Sorry, the doctor had just left for the night
with only the nurse on the unit and “in charge”. The doctor would call in the morning.

Heartbroken
and angry, Jenny’s parents drove the hour and a half home. They made phone
calls to the hospital that was equipped to provide decent care and were told
that Jenny was on a waiting list. Perhaps a bed would open in two days. But
there were obstacles. Because Jenny was in police custody, the doctor, the
social worker and the county caseworker would all need to agree to the
transfer. And then, there would have to be a court hearing. Jenny would need to
testify on her own behalf. “In person?” asked Jenny’s dad, “Or from the
hospital by phone or in writing?” They were told “It depends.” If Jenny had to appear in person she would be shackled and transported by the police.

How
could this happen in 2013, in the United States, to a critically ill child? It
does. This story is entirely true except for one detail. “Jenny” is
suffering not from kidney disease, but from a mental illness. Is this scenario
acceptable for a child with kidney disease? If not, then why should it EVER be acceptable for that same child with mental illness? My heart is breaking.

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My book, Perfect Chaos, co-authored with my daughter, was released May 2012 (St. Martin's Press). I am a professor in special education. I love new experiences and learning new things. I don't know if anyone is out there reading this except my family!